The undersigned organizations represent cancer patients
and health care professionals. We share the goal of
a cancer care system that provides high-quality and
affordable care to all. Our individual organizations
fund cancer research, provide a wide range of educational
and patient services to those living with cancer, engage
in cancer care quality improvement efforts, and represent
stakeholders in the cancer community in advocating for
access to quality cancer care.

People who are diagnosed with cancer often need complex,
multi-disciplinary care. Treatment for cancer may
include surgery, radiation therapy, and drug
therapy. People with cancer often experience a wide
range of treatment side effects that must be
addressed. In addition, cancer patients increasingly
confront “financial toxicity” caused by the heavy
financial burden they shoulder for their care.

New cancer treatment options, including but not limited to
immunotherapies, are providing significant benefits to
cancer patients. In addition, many exciting new
therapies are in the research and development
pipeline. However, these treatments will only make a
difference for those with cancer if patients have timely
access to them through high-quality and affordable
insurance.

We appreciate the opportunity to comment on the proposed
Notice of Benefit and Payment Parameters for 2019, an
important step in defining what qualified health plan
options patients will have access to in that
year. We focus our comments on the
portions of the proposal related to essential health
benefits, network adequacy, and navigators.

Options for States to Develop “Essential Health
Benefits”

The proposed rule suggests that states need more
flexibility in how they meet the Affordable Care Act (ACA)
requirement that health insurers in the individual and
small group markets cover at least ten essential health
benefits (EHB) to the extent that they would be covered
under a typical employer plan.

The proposal changes the definition of a typical employer
plan to 1) a small or large employer plan solid in one or
more states with enrollment of at least 5,000 enrollees,
or 2) a self-insured group health plan sold in one or more
states with enrollment of at least 5,000 enrollees.
But the more significant proposal is the process for
states to select an EHB benchmark plan. The states
have these options:

States could maintain their
current 2017 EHB-benchmark plan.

States could select any of the 50
EHB-benchmark plans used by other states in 2017.

States could replace one or more
EHB categories from another state’s 2017 EHB-benchmark
plan. A state could replace any of the ten
required EHB categories in its 2017 EHB-benchmark plan
with the same category or categories from another
state’s 2017 EHB-benchmark. For example,
the state could choose a prescription drug benefit
from one state’s benchmark, maternity care benefits
from another state’s benchmark, and the
hospitalization benefits from a third state’s
benchmark.

States could select a new
EHB-benchmark plan so long as the plan is equal in
scope to a typical employer plan and is no more
generous than the most generous comparison plan.
The comparison plans are the state’s 2017
EHB-benchmark plan and the state’s largest small group
health plans by enrollment.

We are concerned that the flexibility
that would be granted to the states in selection of the
EHB benchmark plan will result in plans that are
inadequate to meet the needs of many, including those with
cancer. If it is the aim of the state to define a
narrow benchmark, we believe it could easily construct
such a plan by carefully choosing different benefit
categories from different states to achieve a benchmark
with limited benefits.

We are concerned that much less generous benchmarks could
be the result in 2019, and that means that cancer patients
may see plan choices in that year that are inadequate for
their complex health care needs. The costs that
consumers would bear for care not covered by the plan
would not, with one exception, be counted toward their
out-of-pocket limits. We are pleased that the
proposed rule provides that all drugs will be considered
essential health benefits, which means that the costs
associated with them will count toward the annual limits
on cost-sharing. This would apply in those
situations where a plan’s drug coverage exceeds that of
the benchmark. This is an important protection but
not an adequate protection from crippling cost-sharing for
people with cancer.

The drafters of the proposed rule concede that patients
with significant health care needs may not have coverage
for certain services, depending on the choices of states
regarding their benchmark plans. We think cancer
patients will be among those who will suffer from more
limited benchmark plans in 2019. We strongly urge
the Centers for Medicare and Medicaid Services (CMS) to
retain the current standards for benchmark choices, which
give states ten choices of plans for benchmarks, including
seven that are state-specific and three others that are
the largest three national Federal Employees Health
Benefits Program plan options by enrollment. The
current system gives states considerable
flexibility. The proposed rule would significantly
increase state flexibility, but at the potential expense
of patients relying on comprehensive coverage for their
care.

Federal Default Definition of EHB

The proposed rule identifies a “federal definition of EHB”
as a matter for future consideration. A federal EHB
definition is not discussed at length in the proposed
rule. We look forward to the opportunity to provide
input on a federal EHB definition, keeping in mind the
needs of cancer patients with significant health care
needs. We recommend, as we have above, that the
current standards for benchmark plan choice remain in
effect while other approaches, including a federal
definition of EHB, are considered. We are certainly
not endorsing a federal EHB definition in the absence of
details about such definition, but we look forward to
further discussion about this concept.

The limited information in the proposed rule about a
federal EHB definition includes mention of a national
benchmark plan standard for prescription drugs. We
are concerned that this could be implemented as a national
formulary accompanied by strict utilization controls.

We have concerns about a limited formulary that would
create obstacles to cancer patient access to drugs,
including targeted therapies. At a time when cancer
treatments are increasingly targeted or even personalized,
a limited formulary poses substantial challenges for
prompt patient access to those drugs.

We appreciate that the concept of a national benchmark
plan standard for prescription drugs is identified for
future consideration and discussion. We will,
at the appropriate time, provide additional insights about
the potential impact of formulary limits on cancer
patients.

Network Adequacy

The proposed rule would continue the certification
approach for network adequacy and essential community
providers that CMS adopted in the Market Stabilization
rule. According to this approach, states would have
responsibility for review of network adequacy if they have
authority to enforce standards that are at least equal to
the “reasonable access standard” defined in federal
regulations. In states unable to conduct network
adequacy reviews, CMS would permit insurers to rely on
accreditation.

We are concerned that the approach that permits state
deference without any federal oversight will result in
restrictive networks that will be inadequate for people
with serious health care needs that require
multi-disciplinary specialty care.

We recommend instead that quantitative standards of time
and distance be combined with qualitative standards for
assessing access to specialty care. In addition,
there should be a rapid and neutral dispute resolution
process for addressing patient requests for out-of-network
care. Finally, out-of-pocket costs for
out-of-network care should be counted toward out-of-pocket
maximums. These standards could be utilized in a
system that defers generally to the states but retains a
layer of federal oversight.

Cancer patients often receive care in cancer care settings
near home, but there are also often occasions when
patients, including those with rare or difficult-to-treat
cancers, need care at cancer centers or providers that are
not in-network. We urge that network adequacy be
reviewed according to qualitative and quantitative
standards and that strong patient protections be available
for those patients whose best treatment option is
out-of-network.

Out-of-Pocket Maximums

The proposed rule would increase the out-of-pocket
maximums to $7,900 for individual coverage and $15,800 for
family coverage, the largest single-year increase since
the maximums were implemented in 2014. These
maximums will pose a serious burden on cancer patients,
and their impact is exacerbated by the fact that certain
out-of-pocket spending, including for out-of-network care,
is not counted toward the maximums.

Navigators

The proposed rule makes two significant changes in the
standards for navigators. First, the proposal
eliminates the requirement that at least one navigator be
a community and consumer-focused nonprofit group.
Second, the proposed rule would eliminate the requirement
that a navigator maintain a physical presence in the
exchange service area to provide in-person support.

We do not support these changes. Although we
understand that most services can be provided via phone
and online, we strongly believe that there should be a
requirement for in-person services when consumers need
that special assistance. We also believe that the
combination of a consumer-based organization and other
navigator entities (a chamber of commerce, professional
organizations, and trade associations) is preferable to a
system that eliminates any consumer-focused organizations.